Advancing youth co-design of ethical guidelines for AI-powered digital mental health tools
C. A. Figueroa (University of California, TU Delft - Information and Communication Technology)
G. Ramos (University of California)
A. M. Psihogios (Northwestern University Feinberg School of Medicine)
E. Ekuban (Be Ubuntu Foundation)
P. Bansie (Be Ubuntu Foundation)
M. de Haas (Be Ubuntu Foundation)
N. S. Karnik (University of Illinois at Chicago)
O. Ajilore (University of Illinois at Chicago)
E. E. Anderson (Loyola University Chicago)
C. Stiles-Shields (University of Illinois at Chicago)
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Abstract
Adolescents and young adults (AYA) often face mental health challenges and are heavily influenced by technology. Digital health interventions (DHIs), leveraging smartphone data and artificial intelligence, offer immense potential for personalized and accessible mental health support. However, ethical guidelines for DHI research fail to address AYA’s unique developmental and technological needs and leave crucial ethical questions unanswered. This gap creates risks of either over- or under-protecting AYA in DHI research, slowing progress and causing harm. This Perspective examines ethical gaps in DHI research for AYA, focusing on three critical domains: challenges of passive data collection and artificial intelligence, consent practices, and risks of exacerbating inequities. We propose an agenda for ethical guidance based on bioethical principles autonomy, respect for persons, beneficence and justice, developed through participatory research with AYA, particularly marginalized groups. We discuss methodologies to achieve this agenda, ensuring ethical, youth-focused and equitable DHI research for the mental health of AYA.